One mom's journey through life, love, and loss.

September 18, 2018

Hi Baby Girl. I miss you. I’m oddly relaxed tonight, enjoying some TV time with Daddy. I’ve been thinking a lot lately about your disease and I’ve come to realize that maybe that is the main source of my anxiety the last little while. I think it’s time that I get some of those thoughts out in the open. I still have a very hard time looking at the pictures of you that were taken after your diagnosis. Those pictures clearly show the pain and ugliness of what your disease really was. I’m hoping that writing about it will make me more comfortable with everything that you went through.

ITP – Immune Thrombocytopenic Purpura is an auto immune disease that is characterized as a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. People with the disease have too few platelets in the blood. ITP is detected with a routine blood test called a CBC – complete blood count. The White/Red Cell count is normal but the Platelet count is abnormal. Normal Platelet numbers are 150,000 – 350,000, ITP patients can live normal lives with platelet counts of at least 80,000. Children usually beat ITP within 6 months of diagnosis and Adults are more likely to be chronic.

This is ITP:

ITP is platelet counts of less than 10,000 every single week. ITP is hospital stay after hospital stay. ITP is touching your baby the wrong way and leaving a bruise. ITP is being poked 4 or 5 times every week just to get a new IV in. ITP is bruises from head to toe and nose bleeds for no reason. ITP is a stubbed toe that bleeds for 25 minutes and hoping and praying you don’t break the scab open. ITP is Kitty scratches that land us in the hospital and leave major black eyes. ITP is ugly. ITP is hard. ITP is my worst nightmare. ITP is hearing the same news over and over and trying treatment after treatment. Small ups brought big celebrations that were short lived because there would be a set back almost immediately. ITP is a cough that leads to a brain bleed. Your battle was short but it was full. You fought so hard. Your smile rarely left your face, only for short amounts of time while you were being poked relentlessly. You were so resilient and strong. So Brave. My hero.

This is the face of a fighter:

You never gave up and neither will we. We will brave this world in honor of you, Turkey Bird. I am so thankful for all the lessons you taught me on this journey. To be strong, to be courageous, to never dwell on the scary and the hard, to look forward after every set back. You left a legacy and I WILL figure out a way to carry that on. I promise. I will always love you and you will always be in my heart. I will always try my best to live without fear and continue to move forward, just like you did.

Thank You for teaching Mama all these things. I love you to heaven and back Turkey Bird!